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Thursday, June 28, 2018

[image: rainbow colored hands in silhouette,
upraised and reaching out with joy.]

The saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands … and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can’t hear or understand it. That was fortunate as the original video was removed from YouTube.) The video explains,

“It comes down to repetition. When we, as people with Asperger’s, are in a really unknown situation or we’re in a situation where there’s a lot of anxiety […], there’s a lot of stress, the way that we manage that, is because generally it’s overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it’s going to happen the same time every time. Therefore, I get a little bit of comfort from it.”

This does not even begin to describe why I flap my hands or make other “Autistic movements.” Yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don’t flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end. I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word “childlike” and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers, or a mansion kitchen staffed entirely by giant teddy bears.

I’d see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they’d already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy—pretty much the exact opposite of what is being taught in the video, when Asperger Experts says, “it’s basically a giant signal saying, “hey! I’m not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it.”

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I’m not comfortable and suffering is another kind of hand flap. It’s a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions—I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues.

My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that’s not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts:

“You shouldn’t just try to stop it because then they’re just going to find some other way of gaining comfort. […] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that’s just even more annoying.”

No.

You shouldn’t try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say “we” and “us,” I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don’t assume someone is not Autistic because you don’t see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

The Asperger's Experts video presents hand flapping as a necessary evil—something that is annoying but has to be tolerated because we do it to soothe anxiety, and might end up doing something even more annoying if we’re forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it “might look ridiculous” or whether it’s better to “[transition] into listening to the same song over and over again, [or] say the same thing in [one’s] mind over and over again.” the focus should be on building a society that understands that we don’t all move our bodies the same way and that’s okay.

“You know, you don’t see many people that are forty doing this [waves hands].” I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It’s okay to move differently from others. It’s okay to have a different neurology and it’s okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an “annoying tic.”

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of “just relax and be yourself,” but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent … wasted … so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong, and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax – school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don’t care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The Asperger's Expert video’s reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the “annoying” and “ridiculous” behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it’s harder to justify allowing people to be “annoying” just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap.)

The makers of the video may be Asperger’s Experts, but they are most surely not Maxfield Experts, because I’m not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don’t want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you’ve met one Autistic person, you’ve met one Autistic person. There is not just one way to be Autistic. I’m sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren’t like the description in the video but aren’t like me, either.

So when you see someone flapping their hands, don’t make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing—better even than statistically-backed guessing—is getting to know the individual Autist and learning what hand flapping means for them. Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals; it’s good to learn general autism data, but “at the end of the day” there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that’s how it’s all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don’t hate on the flaps, don’t be afraid of them, don’t judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.

(Note: A version of this post was published at unstrangemind.com in 2014.)

If you’re a parent of a teenage or adult child with a disability, it’s important to avoid infantilising them.

What is infantilisation? It’s treating people who are no longer children like children in a way that restricts their ability to be fully integrated with their age-peers. It’s talking to them in a condescending voice, dismissing their ideas and opinions, acting as though you will always understand them better than they understand themselves, or going out of your way to shield them from everything you think may be even slightly dangerous.

Infantalisation is treating your child as though they will always be a child, whether they’re five, fifteen or thirty-five.

Infantilisation is different from recognising that disabled people have support needs. That’s part of what being disabled means: being at a relative disadvantage compared to non-disabled people because we require specific supports to help us live within the community, whether that disadvantage is related to physical health, cognition, mental health, sensory processing or perception, mobility, or something else people find disabling.

It doesn’t matter what kind of disability your child has, whether chronic illnesses and intellectual, mobility, psychiatric, learning, developmental and sensory disabilities, or a combination. People with all kinds of disabilities deserve to be taken seriously and treated with respect.

A teenager or an adult with an intellectual or developmental disability is still a teenager or an adult. Accommodating the support needs of an autistic 17-year-old or a 30-year-old with Down syndrome does not mean that you should treat them as though they’re younger than their actual age. You can support people without condescending to them.

Disabled teenagers and adults are just that: teens and adults. Teens and adults may be interested in relationships, sex, college/university, dating, alcohol, parties, mature subject matter in films, TV or books, and other activities and experiences that other people their age are interested in. Pretending that disabled teens and adults don’t have these interests does them a disservice.

If you don’t recognise your teen or adult child's autonomy, they may seek out predatory people who pretend to respect them, but who may lead them into danger because you didn’t talk to them about sex or drugs or relationships or realise that they, like other people their age, may want to try things out.

I’ve seen other disability activists, like Cal Montgomery, talk about allowing disabled people the right to experience ‘dignity of risk,’ or allowing them to try new things and potentially fail at them or learn from their mistakes. I think that’s important. Young people of all ages should have the opportunity to learn what works and what doesn’t work for them.

I understand the desire to protect one’s children from harm. If I had children I would want to avoid them from being harmed, too. Unfortunately, you can’t always control what happens to people throughout the lifespan, as much as you may try. The inherent uncertainty of life requires that parents allow their children to adapt and respond to that uncertainty. There is no such thing as a permanent cocoon, and you’ll find that your teenage or adult child is probably more resilient than you may expect. We deserve the right to try.

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord,’ even though I was only going through the motions of practising Christianity.

I was also a legal adult when this happened; I didn’t tell my parents explicitly that I was no longer Christian until I was eighteen. The appearance was what mattered, even if it was clear my beliefs had changed. When I was nineteen years old, my parents installed parental controls on my Windows account. (I found a way to disable them a few days after they installed these controls without their noticing, but that doesn’t excuse the fact that they still treated me like a small child even though I was an adult.) I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W. Bush in 2004.

My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me meant controlling me.

I should also add that recognising that your teenage or adult child with a disability is, in fact, a teenager or an adult is different from using their age as a weapon against them. You can respect their autonomy and recognise that they may need support in certain areas. Just because somebody struggles with housework and certain kinds of planning, as I do, doesn’t mean that you can tell me ‘why, you’re 32! If you want to be treated like an adult, you should be able to muster up those non-existent executive functioning skills!’

Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are, and direct the means by which I receive support. Autonomy in adolescence or adulthood is about being able to make decisions about one’s own life and enlisting support to make those decisions and implement them. It is not about having to do every single thing by yourself if your disability prevents you from doing so.

Again, teenagers and adults with disabilities are still teenagers and adults. We have the right to make decisions about our lives and receive support to help us make and carry out those decisions. Having a disability doesn’t mean we’re children, or that we don’t have the right to learn by trial and error. We should be allowed to learn and grow from our experiences.

Your children are not an extension of you; they’re autonomous human beings who will eventually develop their own goals and priorities in their lives that may or may not coincide with yours. Your job is to help guide and support them, not to use them as proxies for your own desires. Respecting disabled people’s autonomy helps us live healthier, more fulfilled lives.

In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure.

I can’t know what it is like to have epilepsy or to have a child with epilepsy, but I can draw on the empathy I felt for what Bear went through. I'd also like to put a call out to other autistic writers: we need more essays to help other autistics with epilepsy and parents of autistics with epilepsy. (I will write what I can—we need you to write what you live.)

Epilepsy organizations and doctors have drawn attention to the interplay between autism and epilepsy on many websites, and in many books. The Epilepsy Foundation has a page on their site titled, “Epilepsy and Autism: Is There a Relationship?” (The short answer: yes, there is definitely a relationship between epilepsy and autism.) The Epilepsy Foundation underlines that fact on another page for medical professionals, titled “The Complex Relationship Between Autism Spectrum Disorders and Epilepsy,” which says, “There is a strong association between autism spectrum disorders (ASD) and epilepsy.”

Depression

Depression and anxiety are so important that I dedicated an entire chapter to them in my last book, The ABCs of Autism Acceptance. I cite research statistics about autism and depression in that chapter such as the British study that found that 71% of autistic children had a mental health issue while 40% had two or more mental health issues. Autistic children have 28 times as much suicidal ideation as non-autistic children.

Add seizures to the mix and those figures take a sharp turn upward. The Epilepsy Foundation reports that 20% of children with epilepsy have thought about suicide. Obviously the combination of autism and epilepsy dramatically increases the risk of depression. After factoring out pre-existing psychological disabilities, the suicide rate among people with epilepsy is twice as high as that among people without epilepsy.

Keep a watch for the signs of depression and don’t be afraid to talk to your child about depression. Remember that autistic people don’t always show the same signs of depression as non-autistic people and often we need depression treatments tailored to us.

Emotional Regulation

Many autistic people struggle to regulate our emotions. Emotional regulation can be a struggle for people with epilepsy, too. If your child is autistic and has epilepsy, any burst of rage might genuinely be out of their control. Epilepsy also can cause a wide range of emotional distress. In addition to the situational depression that can come from struggling to control seizures, there is a condition called interictal dysphoric disorder (IDD) that is marked by depression (dysphoric) between seizures (interictal) and worsens when seizures are less controlled.

I spent some time reading public Twitter messages from autistic people about seizures and noticed many comments about depression, anxiety, and anger occurring before and/or after seizures. If your child is autistic you’re probably already used to discerning the difference between meltdowns and non-meltdown expressions of anger. If your autistic child also has epilepsy, you need to watch for epilepsy-related anger as well. Understanding your child’s emotional landscape becomes more complicated with both autism and epilepsy in the mix.

Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president (now removed), alleging to show property damage to the upholstered seats of her car done by her autistic son.

Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves.

Prutsman's article also included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.

I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the "real" or "true" manifestation of autism.

It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media-fed, and toxic.

It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media.

When I named my blog The Autism Wars I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp B, is at war with the neurodiversity camp, camp A.

I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated.

Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the autism parent feedback loop of woe? If so, as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes?

I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me. He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic children? How many such parents will happen upon Prutsman's blog through social media browsing?

Let me take a minute to define how I think this feedback loop works:

Digital Exhibitionism: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, sleep deprived, clinically depressed, etc) and as a result, may be making decisions with compromised executive function.

The Positive Feedback Loop of Pain, Grief, Frustration: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.

If left unchecked, getting attention for being in pain becomes its own reward. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.

This feedback loop does damage to a person's motivation to seek actual long-term help for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short-term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.

Any attempt to express concern for the disabled target of the negative content to a group in this state of mind will only strengthen its resolve because it encourages the group to make the problem about those they perceive as their attackers. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.

The case of Isabelle Stapleton, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target.

Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights, and her blog about parenting Isabelle—deliberately named The Status Woe—acquired a large, cult-like following of parents. The resulting frustration and defiance at anyone expressing concern when Kelli and other parents posted negative content about their children is similar in tone and approach to parts of Mr. Prutsman's written content.

I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults.

The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people. Norman, the MIT AI that was fed with Reddit data and which now only thinks of murder and death, and Tay, Microsoft's chatbot that was taught by Twitter trolls to be racist and misogynist, show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents.

Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops.

Here is my other concern with Prutsman's article.

Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by Dr. Simon Baron-Cohen in Scientific American.

Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors, rather than by proper diagnostic standards.

He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement.

"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."

-Shain M. Neumeier, Esq.

Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped 'other' by listing commentary from those he did not know—and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group A," non-participating chapter members, and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists.

Prutsman implies that the enemy has won the autism label battle. Now his group must have a new autism label for their kids, one that restores complete power and control of the autism conversation and public policy dictatorship to them.

The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president, who are affluent, white, and embedded in the feedback loop of woe, are still the loudest and most heard voices in our community. Yet that massive platform is drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.

Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives, harms my son by perpetuating a deep-seeded ableism that negatively influences the public view of nonverbal, high-support-need autistic youth.

The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community, and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to see the need to protect their own disabled offspring by not oversharing negative content, is a risky proposition on his part.

Prutsman is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community, so parents can run the autism world. Without the consent or voices of their own autistic loved ones, or parents like me.

(And here is a sidenote. Yes, nonverbal humans can indicate consent—if they are allowed to. Once competence is presumed, and communication pathways actively sought for nonspeaking people, yes and no gestures, switches, even eye blinks are possible.)

I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp that every stakeholder in our community has a right to equal representation, whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.

Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.

The question for us is: What can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base?

Because something has to change here. This type of dysfunction is the root of community altercations, and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.

This is unsustainable.

--------

*Prutsman changed the analogy on the SFASA site to Scandinavian rather than African-American. Our link is to an archived version of the original post.

[Note: This post discusses anxiety, medications, and chemical restraints. It is meant to caution against overmedication and about risk factors in medication for autistic people, with the understanding that many autistic people rely on psychiatric medication for their health and well-being.]

I would need more than two hands to count the psych meds I’ve been given.

There are enough that I don’t remember all of them; it started in the first grade. Some were just regular ADHD meds—which I needed—not psychotropic. As years passed, others were anti-anxiety SSRIs, and then antipsychotics; many well before I’d hit the end of middle school (these include Risperdal, Paxil, and Wellbutrin).

While I was not diagnosed autistic until I was 14 or 15, the logic under which these drugs were prescribed to me was the same as for those diagnosed autistic: The psychiatrists likely said the medications would manage my anxiety and my outbursts. (I now know the outbursts occurred from a trauma history, and having a hard time communicating.)

But the medications were like a merry-go-round. Some effectively sedated me, others made me uncontrollably irritable. Abilify is proving difficult to get off of, even though I'm experiencing the side effect moderate akathisia, which is “a movement disorder characterized by subjective feelings of internal restlessness or jitteriness with a compelling urge to move. Patients describe ‘nervousness, inner tension, discomfort, restlessness, itching, and/or an inability to relax.’” The result is repetitive, unwanted movements that primarily affect the legs. Untreated, akathisia can lead to worsening suicidal ideation, agitation, and aggression.

I found out I wasn’t alone in the overmedication department in the 2010s, when I found autistic community, and read some anecdotal experiences. For this article, I collected information about autistic people's experiences with medications in an informal Google Forms survey.

One survey respondent, Alex, has been on 11-15 different psychiatric medications between the ages of 4-18. Cat says they’ve been on 16 or more so far. Survey taker “12-year-old boy” states he was around four years old when he was first given meds. And S.L. and Cass report they were around eight years old when they started meds. Multiple survey respondents noted they had been on four or more medications at one time.

The statistics on psychiatric medication and autistic people

I discovered scientific research on the heavy medication of autistic people in 2016, while I was looking into how autistics interact with the mental health care system.

In one study, researchers found in 2013 that out of 33,565 children with ASD, 64% were on at least one psychotropic medication, 35% were on at least two, and 15% were on at least three. The authors concluded that,

“Despite minimal evidence of the effectiveness or appropriateness of multidrug treatment of ASD, psychotropic medications are commonly used, singly and in combination, for ASD and its co-occurring conditions. Our results indicate the need to develop standards of care around the prescription of psychotropic medications to children with ASD.”

In 2008, The Interactive Autism Network (IAN) published a breakdown of psychiatric medication types used as autism "treatments": Of the more than 5,000 parents surveyed, 31% reported that their autistic children were taking at least one psychotropic drug, and 6% were taking three or more.

And in a 2014 study on prescribing in primary health care, researchers note “Drug surveys and studies of health insurance claims databases conducted in the USA have shown that over time more psychotropic drugs (and in particular antipsychotics, antidepressants and stimulants) are being prescribed to children, young people and adults with ASD…” and there is “limited evidence to guide psychotropic medication use in the ASD population.” A 2013 article concurs about the lack of evidence.

The dangers of misusing medication on autistics

Judicious restraint needed

The research cited above shows that medical professionals should be judicious in prescribing medications. Yet the authors of the 2014 primary health care study condone the use of aripiprazole (Abilify) and risperidone (Risperdal), which are both antipsychotics. The article states that these drugs have demonstrated efficacy in treating irritability, aggression, and self-injurious behaviors in autistic people.

My personal experience is that I was prescribed Abilify at age 16, presumably as an adjunct for my SSRI (an antidepressant drug type), and when I then developed akathisia, I was simply prescribed added muscle relaxants. As Risperdal caused me uncontrollable anger and irritability, I was taken off of it. These two drugs are FDA-approved for treating irritability in autism, the only two approved for such use, including in children. Other uses of psychotropic drugs “for autism” are off-label.

Side effects

In discussing antipsychotics in my survey, Alex wrote: “I was really disconnected from my emotions while I was on [Risperdal] for most of my childhood. It also caused tardive dyskinesia.” They were misdiagnosed with bipolar disorder at age four. S.L. noted drastic weight loss, fainting, and appetite disturbances that were not taken seriously as a side effect of antipsychotics.

A study led by Dr. Sinead Brophy and published in 2018, found that, “Antipsychotics are prescribed predominantly to those with intellectual difficulty/autism and there is evidence that they can increase rates of respiratory disease, epilepsy, diabetes for all, and of hospital-admitted depression and injury.” Even for those whom the drugs are supposedly designed, they have risks of inefficacy and provoking serious relapses. Some studies have also found there is an increased mortality risk from antipsychotics. While some people feel antipsychotics help them and choose to be on them, these drugs are prescribed to autistic people at high rates despite the risks.

The anti-depressant SSRIs should also be used with caution, as they too come with a host of side effects, some of which autistic people may experience intensely. We can also experience confusing signals from our bodies—like alexithymia—and communication barriers. This is potentially dangerous if negative side effects occur. SSRIs can also be very difficult to quit.

Owl, one respondent to my survey, says the SSRI Welbutrin impacted their memory. A four year period of theirs is “very foggy and chronologically hard to distinguish.” In addition, “Elavil triggered a bunch of weird physical reactions that sound made up. Cymbalta just nearly killed me and tore apart my personality entirely. Looking back I seemed prone to really strange and bad side effects that should have been of concern to at least one of my doctors.”

What reasoning goes into prescribing autistic people these medications?

According to the parents

According to IAN’s report, 62% of parents thought the use of a psychotropic medication on their child came with low risk, and 80% felt their children improved on the medications.

It is not clear how parents decided there was low risk, or determined improvement, but possibly it includes the criteria listed in the report's Table One, which notes common reasons that determined which drug an autistic child was given: Antipsychotics for “irritability, tantrums, aggression, and unstable mood”; antidepressants for “stereotypic (repetitive) behaviors, unstable mood, anxiety, and depression,” and anxiolytics (anti-anxiety meds) are used to treat “anxiety.”

Misdiagnosis, control and abuse, suppressing autistic traits

Survey respondent Cass believes the purpose of the medication given to them was control: They were considered not just autistic, but a “bad kid.” Respondents “12 year old boy” and Kem reported being prescribed drugs to shut them up and keep them still. Kem also received a misdiagnosis of bipolar disorder, as did Cat—who misdiagnosed with multiple forms of bipolar, along with borderline personality disorder. S.L. says that factors included their methods of communicating, which included “lack of verbal communication,” and age.

Alex reported that in addition to gender and age factors,

“I’m pretty sure the reason I was given medications was to make me more compliant. Risperdal in particular seems like it was chemical restraint. My parents were abusive and obsessed with control. No one listened to me about side effects or whether I thought the meds were actually doing what they were supposed to do.”

Owl reported that, upon seeking autism and ADHD assessments, they were “continually dismissed and treated for depression and anxiety despite none of the medications helping.” They chalk most of their negative experience up to bias around their gender presentation reading as female, along with their nonbinary and queer identities. “It seems their logic was that: I thought something was going on with me, ergo I was 'anxious' about it, and it was so it had to be ‘depression,’ which is easier than delving into anything more complicated.”

A look into long-term impact

Autistic people have been fighting the use of antipsychotics on us for years. For example, in 2011, the Autistic Self Advocacy Network issued a call to action against the use of chemical restraints on people with intellectual and developmental disabilities (I/DD). The organization Autistic People Against Neuroleptic Abuse (APANA) was active in the 2000s, and now exists as a web archive. Based in the UK, APANA worked to, among other things:

“End routine prescribing and re-prescribing of neuroleptics for ASD

Reduce current neuroleptic prescribing for all people with learning disabilities, in a gradual and carefully monitored manner to lowest feasible levels—zero where possible

Raise awareness of side-effects and withdrawal effects.”

In 2017, the FDA hosted a “Patient-focused Drug Development for Autism” public meeting. I was one of only three self-advocates on the panels. We spoke of clarifying co-occurring conditions from autism, and assessing what resources were needed there. We asserted that we didn’t want “treatments” that simply shut down our autistic traits. We wanted better communication tools, help with movement and task initiation as well as executive functioning, and supports for community living.

There is a need for quality of life supports as opposed to automatically choosing medications “for autism.” It’s not just the direct effects of the drugs—there’s a diversion of funds that could be better spent on researching supports. But the direct effects of psychotropic drug cocktails on autistic people can be indelible and devastating.

Survey respondent Cass’s academic career was ended by the effects of the antipsychotic Geodon. They just want to be able to write again. Kem doesn’t trust medical professionals anymore. Neither does Alex.

Cat reflects, “If I had known that my differences were autism, I could have built a life and career around something more compatible with my actual needs.” They have instead experienced 15+ years of chronic and debilitating stress-related pain.

Owl related that “I experience neurological stuff. My physical health is not good. But mostly,” their last answer reads, “it's that my life has been stagnant, gone nowhere, fighting for support I need and am still not getting. But pills, oh have I got pills.”

Sarah Cassidy's INSAR 2018 SIG on autism and suicidality brought ~60 autistic people and autism researchers and professionals to discuss research on, and factors underlying and mitigating, suicidality in autistic people—as well as next steps for researchers.

The statements and images below are from our original Twitter Moment compilation/report on this SIG. We then heard back that Twitter feeds can be difficult to parse and access for some, so we've created this version as well, edited for readability. Uncredited statements are from the Thinking Person's Guide to Autism Twitter feed.

Photo by Sara Luterman
[image: Side. Blue bar at top with white text reading" Progress so far"
The rest of the slide has a white background with red text reading,
"•1 INSAR poster presentation on suicidality in autism in 2014
•INSAR 2018 oral presentations strand "Suicide and bullying and
number of additional posters
•Presentations across numbers of labs
•Increased sample sizes, comparison groups included, looking at the
*why* question"]

Now: Abigail Thompson from Autistica, the UK’s autism research charity, which aims to help autistic people live long healthy happy lives which makes me cry because Autism Speaks and Autism Society: why aren’t your missions this clear and simple?

Sara Luterman:

I know I gush about @AutisticaUK a lot, but I’m going to keep gushing about them as long as they keep leading the world in funding research that actually makes a difference in my life.

Photo by Sara Luterman

[image: Projected slide showing a group of human faces in profile,

facing right, in white, blue, and dark orange. Orange text on the left reads,

"Long, happy, healthy lives for all autistic people." Text at the bottom of the slide

reads, "Autistica" and "Dr. Abigail Thompson"]

Factors: Lack of belonging: “If you don’t belong, you’re gone”

What does belonging mean to #autistic people, and how can it be captured?

Sleep difficulties: Important and under-recognized/diagnosed in autism. Also important to define and measure: night awakenings, nightmares?

Development of appropriate assessment tools: They have been developed for the general population, but not yet validated for #autistic people. General questions may not be clear or relevant for autistic ppl.

Social communication: Over/under reporting of suicidality?

Literal interpretation of questions: “We mean what we say.”

Negative experiences could lead to masking: “We learn to say we are fine”

Need to consider lived experience in assessment.

Help seeking. Increased barrier for support/treatment.

Do negative experiences impact willingness to seek help (e.g., not feeling believed?)

One approach Autistica is taking on underfunded but crucial autism areas: Writing accessible reports, and taking them to the agencies who could possibly fund them (in the US and UK).

Disclosing diagnosis: “You want the right people to know” Exploring experiences of disclosing, and how and when this may impact suicidality.

Risk/protective factors: What keeps people here? …special interests; we need to make sure we aren’t “pathologizing passion”; positive social interaction where desired in the way it is desired.

Conceptualization: Phenomenology of suicidality in autism: Quality of life more important than mental health? What does a “good life” look like?

In every country in the world, there are more undiagnosed adults than diagnosed. This is a fact. This is a factor. This is a risk.

Could religion or other value systems that discourage suicide be a protective factor? Research indicates this is possible.

The strength of the autistic community is what keeps many autistic people going, and mitigates feeling like one doesn’t belong— especially when there’s very little support available.

Medication: “If our brains are wired differently, then medication must have a different effect upon us.” We need to explore the effectiveness & side effects of meds in autism. How do meds interact with autistic traits? Are antidepressants a risk?

Dr. Eileen Crehan:

And even once we are aware of different effects, how can we train more psychiatrists in this area of specialty? Access to medical providers with knowledge of ASD is limited!

Autistica is working with organizations to find out what kinds of mental health services are most helpful. Many autistic people find phones and going to ER/emergency services aversive. Would a text-based chat service be more useful?

We think autistic people are more likely to have a short span of time between considering suicide and acting on it (impulse control?). They also tend to choose more final methods, but research is forthcoming. Limited access to methods may help.

Gender differences: Autistic females are more at risk of suicide, compared to general population. Why? Masking? Late diagnosis? Differences in communication, suicide planning, methods?

Many autistic people are able to realize that being in an extremely aversive in-patient/hospitalized situation is better than being dead — but those shouldn’t be the only options. Need more humanistic, autism-friendly options for those in crisis.

Suicidality can be due to needing to "release pressure.” Especially when aware mental health services don’t recognize autistic symptoms/experience.

Some autistic people find meds can help with compulsive thoughts that can build to suicidal impulses.

Lack of joy: “How do we find joy in a world that doesn’t understand us?”

Autistic people discussed that stressors associated with being autistic can make life feel joyless. Does this increase suicidality risk?

Jon Adams:

Talking suicide & autism

but maybe I don’t understand as they’re only including ‘attempts’

What about those of us that have ideation ‘all the time’ due to co-morbid conditions such as PTSD or are so isolated they ‘don’t feel they belong’

#INSAR2018 #AutisticCultureShift

Some commonly prescribed medications for co-occurring conditions (or medication prescribed for “autism”) have known risks not just for elevating suicidal ideation, but possibly causing other physical symptoms (tics etc.) that increase distress.

Need to be cautious about making autistic people in mental health crisis join group “mindfulness” efforts that are aversive (e.g., visualizing exercises may be NOT GOOD for synesthetes), increase feeling of not belonging, then blamed for “failing."

Maxfield Sparrow:

I am on the aphantasia spectrum. Visualization exercises are really weird experiences for me.

How effective are current therapies for suicidality in #autistic people? Can these therapies be adapted?

Response and prevention: Important to identify and respond to potentially stressful life events (leaving/changing schools).

Jon Adams:

This is great

a small ‘table’ of #ActuallyAutistic people talking feeding in ‘lived experiences’ informing with researchers sat with us 2 develop projects = studies = policies with our “voice” at the core

Would like to know more about suicidality in autistic ppl w/communication disabilities (non-speaking) or intellectual disability/learning disabilities. I wonder, hard, how many written off as “aggressive” or self-injurious are actually suicidal.

And everything that has to do with preventing or containing or medicating these behaviors, rather than understanding/mitigating distress factors is making people with profiles similar to my son’s even more miserable.

This keeps me up at night.

Sara Luterman:

There is no autism-specific drug research on preventing suicidality. As long as the method being looked at isn’t a chemical straitjacket, I’m all for pharmaceutical research on this topic.

Shannon Rosa:

Yes definitely. I am opposed to chemical straightjackets and for understanding autistic mindsets/motivations; the latter includes appropriate meds, as needed.

Sara Luterman:

Protip: 24/7 invasive tracking of everything I do isn’t going to make me less suicidal. I suspect this is true for most autistic people, of all ages. Treat us like we’re human, because we are.

Shona Dav:

It’s true that a mental health crisis might prompt a diagnosis.

But also masking prevents diagnosis and masking increases mental health problems so that might change the data in the opposite direction.

It is hard to get any reliable autism stats cos we are under identified in my view.

Autistic kids (and adults) have a high rate of co-occuring conditions like OCD, anxiety, depression, etc. that can interfere with quality of life and happiness. If they are in distress and medications can help, they should have access to those meds.

James Cusack:

There is a need for a strategic coordination network for research area in order to enable high quality research and rapid progress.

To drive suicidality research forward we need a clear strategy bringing together research in to i) risk/protective factors, ii) intervention/assessment and iii) policy and practice.

Black text in titled boxes on a white background, in landscape orientation. Boxes’s text content from left-to-right, top to bottom:Lack of belonging:“If you don’t belong, you’re gone”What does belonging mean to autistic people and how can it be captured?Help SeekingIncreased barriers for support/treatment?Do negative experiences impact willingness to seek help (i.e., not being believed)Disclosing diagnosis“You want the right people to know”Explore -ve/+ve (negative/positive) experiences of disclosing autism diagnosisHow and when may this impact suicidalityGender differencesAutistic females are moe at risk of suicide than males - opposite to general population, why?•”Masking”•Late diagnosis?•Differences in communication, suicide planning, methods?Sleep difficultiesRisk marker in Gen Pop - impacts capacity to copeImportant and under-recognised/diagnosed in autismImportant to define and measure: night awakenings, nightmares?Risk/Protective Factors“What keeps people here? …special interests; we need to make sure we are not “pathologizing passion”; positive social interaction where desired in the way it is desired.”Lack of Joy“How do we find joy in a world that doesn’t understand us?”Autistic People discussed that stressors associated with being autistic can make life feel joyless. Does this increase risk of suicidality?Development of Appropriate Assessment ToolsSuicidality assessment tools have been developed for the general population, and not yet validated for autistic people - questions may not be clear or relevant for this group.ConceptualizationPhenomenology of suicidality in autismRisk Protective FactorsExploring and adoption existing models of suicidalityQuality of Life more important than mental health? What does a “good life” look like.Treatment Approaches“We don’t know what works”Social CommunicationOver/under reporting of suicidality?Literal Interpretations of questions? “We mean what we say”Negative experiences could lead to masking: “We learn to say we are fine”Need to consider lived experience of autistic people in suicidality assessment (e.g., lack of belonging)Psychosocial InterventionsFew studies of adapted interventions for autistic adults - added complexity of suicidality.What people need depends on the profile they present with (e.g., virtual reality to treat anxiety in autism).How effective are current therapies for suicidality in autistic people? Can these therapies be adapted (e.g. DBT)?In terms of response and prevention, important to identify and respond to potentially stressful life events such as transition (e.g., leaving school, going to University)Online support is a potential opportunityTiered support? Or does this close doors?Medication“If our brains are wired differently then medication must have a different effect upon us”Explore effectiveness and side effects of medication in autismIs anti-depressant medication more likely to increase suicidality in autism than in the general population?How does medication interact with autism characteristics?(End text box descriptions and contents)Arrows lead from “Conceptualization” to “Risk/Protective Factors” “Development of Appropriate Assessment Tools” and ”TreatmentApproaches”Arrows lead from “Risk/Protective Factors” to “Sleep Difficulties” “Lack of Belonging” “Help Seeking” “Disclosing Diagnosis” “Gender Differences” and “Lack of Joy”Arrows lead from “Treatment Approaches” to “Medication” and “Psychosocial Interventions”An arrow leads from “Development of Appropriate Assessment Tools” to “Social Communication”An arrow leads from “Social Communication” to “Adapting Current Tools”]

When I tell people I’m autistic, it usually goes one of two ways; either they can’t make me fit into their idea of what autism is and completely reject it, or they mark me down as “socially awkward” and leave it there.

Autism explains my lack of constant contact, it explains my monologuing about things that interest me, it explains why on social occasions I move around a room like a loose cog in a machine—catching on things, getting stuck in places, jarring against this and that before being knocked into a corner and staying there.

Those are the things about me that you can see. What you can’t see are the other bits; my problems with Executive Function, my never-ending battle with literalness, my lip-reading over auditory-processing, my sensory issues, my affinity with numbers and disassociation with names, and on and on and on.

When people classify me as “socially awkward” they expect too much from me. They’re surprised when I find some things hard. I’m not telling you that I can’t make a shopping list because it’s boring and takes time, I’m telling you that it’s incredibly hard. There are too many variables, I have to hold them all in my head, I can’t, it gets too big. I falter and have to start again, but then the same thing happens. I cannot juggle the thoughts needed like that. I cannot think in a linear way, I have to include all the forks going off in different directions.

You may think in straight lines, but my thoughts are like lightning bolts. They flash brightly, sparking off in every direction, and by the time the thunder rumbles, I have lost the central bolt and am caught in how my hairs all stand on end.

I am not socially awkward, I am socially different. Autism isn’t about not making connections, it’s about making different ones.

I am built to logicise and problem-solve, and this means I am brilliant at certain aspects of thinking, but terrible at things that other people take for granted as "easy."

When I say I find something hard, please don’t tell me how easy it is. Please don’t tell me I just have to do it like this or like that. It will never be easy for me. It will always take time and energy that could be spent elsewhere. If you found quadratic equations hard, I wouldn’t tell you how easy they are. I wouldn’t tell you to just do this or just do that. I accept that although I can explain and help you get to the answer, this may be something you will always need support with.

I am not socially awkward and lazy or incompetent. I did not get this autism diagnosis diagnosis because of shyness. I am autistic, with all the joys and pains being human brings. I am creative and imaginative, I am loving and thoughtful, I am good at things and bad at things. The things you find easy may not be the same as the things I find easy, and that is just fine too.